Guest guest Posted January 28, 2002 Report Share Posted January 28, 2002 Another question is how the FDA and CDC can make these recommendations about ingesting mercury (which they also say should be limited in women and children) and yet say the amounts of mercury being injected into babies veins, even though it can exceed the bolus limit for adults, is not a problem. How can they live with themselves? Sandy from Alaska http://www.vaccinationnews.com http://www.whale.to/vaccines.html http://www.nccn.net/~wwithin/vaccine.htm http://www.909shot.com http://www.thinktwice.com http://www.mercola.com http://www.redflagsweekly.com ALL INFORMATION, DATA, AND MATERIAL CONTAINED, PRESENTED, OR PROVIDED HERE IS FOR GENERAL INFORMATION PURPOSES ONLY AND IS NOT TO BE CONSTRUED AS REFLECTING THE KNOWLEDGE OR OPINIONS OF THE PUBLISHER, AND IS NOT TO BE CONSTRUED OR INTENDED AS PROVIDING MEDICAL OR LEGAL ADVICE. THE DECISION WHETHER OR NOT TO VACCINATE IS AN IMPORTANT AND COMPLEX ISSUE AND SHOULD BE MADE BY YOU, AND YOU ALONE, IN CONSULTATION WITH YOUR HEALTH CARE PROVIDER. (unknown) I got my free issue of Baby Talk magazine today and there was an article about keeping breast milk safe. It said to limit tuna, fish, etc because " mercury is damaging to developing brains " I felt like howling--why don't people see that contradiction? don't eat fish but it's ok for a pregnant woman to get a flu shot and it's ok to shoot your kids full of mercury----ugggh Malissa _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2002 Report Share Posted January 29, 2002 Oh my heart goes out to you..I am Jan and I have Hep C but my husband doesn't..How I got it I am still not sure but it makes no difference..There are treatments out there your son could try according to his Dr. First find a Hep Dr...and he will help you in the right direction..He needs to have a liver biopsy but the most important thing to do IS NOT GIVE UP...I felt the same way when I first found out..I felt dirty and ashamed and that my life was over when that was the farthest from the truth..Alot of us in here can answer your medical questions alot better than I can...Tell your son not to feel it is all his fault because however he caught this he would not have done it had he known he would have contacted the Hep..It is just something we have to deal with..Get him to a Dr, as soon as you can to help get you more answers..There are also Herbal methods to try such as Milk Thistle..You can get that at a health food store..Try to avoid red meats..NO ALOHOL...But tell him to please not give up..Does he have a PC where he can get in touch with us himselff?? It may help him more..Yes we do feeel like screaming in the beginning and crying but as we learn more then we see all we have to do is fight this disease...I found out 2 yrs. ago I have it and have had it for almost 20 yrs. Now that was a shock..I won't keep you any longer cause I could go on forever but as the day goes by you'll see ore posts here that will help you..Please stay with us and you will feel releif sooner than you think..Welcome and no question you may have is ridiculious..We have all had our share of questions..At times I still do.We feel blessed you found us.Where are you from? I am from Louisiana..We are from all over the place..It is nice to meet you and please write again as soon as you can..Pick your chin up Sweetie everything will be ok.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2002 Report Share Posted January 29, 2002 I know when I was on 3rd shift, I never slept a full 8 hours, I'd sleep a few hours after work and then try to get a nap before going back. One thing I liked is that I was much better at getting a workout everyday. I'd go after work. It's a little harder to motivate myself now to get up earlier and go. -dz- --- Terry Long <pawpawto3@...> wrote: > dz I have worked this shift for the last 15 months > seance I went to sallary. I work the third shift for > three months a couple of years ago to fill in the > rest > of my 19 years I was on first shift. If I was still > hourly I would like first shift better but as > sallary > I like this better. If it wasn't for not being able > to > sleep during the day I would like third shift. > Terry > --- imaganeer <imaganeer@...> wrote: > > You work the afternoon shift? I have worked all 3 > > with > > my company. I started out 11-7, went to 3-11 and > > then > > I have been on the day shift for the past 4 > years... > > That suits me better. -dz- > > > > --- Terry Long <pawpawto3@...> wrote: > > > Diane I have been drinking drinking. I also am > > > taking tylenol about 30 minutes before taking > the > > > shot > > > around 11:00 when I get home from work. That was > > my > > > Dr > > > suggestion. > > > Terry > > > --- diane214@... wrote: > > > > Terry, Hang in there..... I will say a special > > > > prayer for you...... I > > > > hope you are forcing lots of water into > > > yourself.... > > > > You must drink, > > > > drink, drink!!!!! (Plain Water) > > > > It helps a lot with the side effects.... I > know > > I > > > > wanted nothing to do > > > > with drinking or eating when I did the > > shots..... > > > > But you have to do > > > > it......... Just rest and don't push > > yourself..... > > > I > > > > used to take a > > > > Tylenol a half hour before the shot, and I did > > it > > > > about 8 pm so I slept > > > > some of the sides away...... For a while > > > anyway..... > > > > Don't forget!!!!!! > > > > We are here for you..... If you need to vent > > then > > > > put it out here..... > > > > We are your support..... Don't forget it > > > either.... > > > > OK Buddy? > > > > > > > > Angel Hugs, > > > > Diane > > > > > > > > May Rainbow Dreams Color Your World With Love, > > > Hope, > > > > Peace & Unity > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2002 Report Share Posted January 29, 2002 Hi My name is Terry. Last March I found out that I had Hep C. I started combo treatment two weeks ago. This is fighable. A fight that I will win. There is several in this group. Between us we can answer your questions. Tell your son to fight this I will be praying for you & your family. Terry --- kbwaltke <kbwaltke@...> wrote: > First I'd like to introduce myself. My name is > ...I hope I am > in the right place. Our son was diagnosed just over > a week ago. He > is 29 and to be honest we feel like the rug of life > was pulled right > out from under our feet. He is recently married > just over a year. > The one thing we know so far is we don't know much. > The doctor just > informed him gave him a number to call for classes > answered a few > questions and I am finding out you either can't > believe what you read > at the CDC or NIH or his doctor is way behind the > times. Right now we > are lost confused NUMB is a word that comes to mind. > His risk factor > was a tatoo. Don't know that it makes any > difference I have a > million questions and can't find any answeres that > are same > information even twice. To be honest that has left > me wondering how > in the world can you fight this if you can't get > good solid info. > And this has so far ripped our son apart to the > point of saying to > his brother that if his wife tests positive he may > need to kill > himself. Its a mess. HELP > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2002 Report Share Posted January 29, 2002 feel free to ask anything you want to know..Beleive it or not those Drs. don't know everything as far as side effects of the treatment go or just how we feel in general..I told one Dr. since he didn't have it how in the hell could he be telling me how I felt...We do cut up sometimes to make us feel a little better..Sometimes laughter is the best medicine so please don't think we don't take our illness seriously because we do but hey join in and enjoy yourself...You are in our thoughts and prayers.......Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2002 Report Share Posted January 29, 2002 Thanks Terry. We are doing every thing we can to be supportive of him and let him know that we stand solidly behind him every step of the way. Its hard of course as they were up to this point trying desperately to have a baby. If we can get his pc to recognize the modem we will do our best to get them on line. Of course they can always drive here to use ours but its a 20 plus mile drive. Thanks for all the support we are going to need it. Don't forget ever the road travels both ways. I know you will win this fight. We all must. Thanks for the welcome. > > First I'd like to introduce myself. My name is > > ...I hope I am > > in the right place. Our son was diagnosed just over > > a week ago. He > > is 29 and to be honest we feel like the rug of life > > was pulled right > > out from under our feet. He is recently married > > just over a year. > > The one thing we know so far is we don't know much. > > The doctor just > > informed him gave him a number to call for classes > > answered a few > > questions and I am finding out you either can't > > believe what you read > > at the CDC or NIH or his doctor is way behind the > > times. Right now we > > are lost confused NUMB is a word that comes to mind. > > His risk factor > > was a tatoo. Don't know that it makes any > > difference I have a > > million questions and can't find any answeres that > > are same > > information even twice. To be honest that has left > > me wondering how > > in the world can you fight this if you can't get > > good solid info. > > And this has so far ripped our son apart to the > > point of saying to > > his brother that if his wife tests positive he may > > need to kill > > himself. Its a mess. HELP > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2002 Report Share Posted January 29, 2002 Right now I guess pretty much I want to know everything. Thats because we really can't say that we know anything except that he tested positive and was sent home saying treatment would begin when it was needed. I realize that I want it fixed and that a cure is not possible at this time. But thats what I want. Of course right now the worst is the emotional backlash. They were trying to have a baby and its a challenge to accept that now no grandchildren will be possible and how those changes in their lives will effect the marriage and knowing that is not my territory. But I worry about the strain that will place on them. I wonder why shouldn't a treatment be started if its available? I am praying that one day we can all smile that alone laugh again. Thanks for all your support > feel free to ask anything you want to know..Beleive it or not those > Drs. don't know everything as far as side effects of the treatment go or just > how we feel in general..I told one Dr. since he didn't have it how in the > hell could he be telling me how I felt...We do cut up sometimes to make us > feel a little better..Sometimes laughter is the best medicine so please don't > think we don't take our illness seriously because we do but hey join in and > enjoy yourself...You are in our thoughts and prayers.......Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2002 Report Share Posted January 29, 2002 Hi If it was me I would find a new Dr NOW! The time to start treatment is when first dignosied. The sooner you start the less damage to the liver. When I first read your E-mail I got so mad about what your sons Dr said I was spiting nails. Terry --- kbwaltke <kbwaltke@...> wrote: > Right now I guess pretty much I want to know > everything. Thats > because we really can't say that we know anything > except that he > tested positive and was sent home saying treatment > would begin > when it was needed. I realize that I want it fixed > and that a cure is > not possible at this time. But thats what I want. > Of course right > now the worst is the emotional backlash. They were > trying to have a > baby and its a challenge to accept that now no > grandchildren will be > possible and how those changes in their lives will > effect the > marriage and knowing that is not my territory. But I > worry about the > strain that will place on them. I wonder why > shouldn't a treatment > be started if its available? I am praying that one > day we can all > smile that alone laugh again. Thanks for all your > support > > > > feel free to ask anything you want to > know..Beleive it or not > those > > Drs. don't know everything as far as side effects > of the treatment > go or just > > how we feel in general..I told one Dr. since he > didn't have it how > in the > > hell could he be telling me how I felt...We do cut > up sometimes to > make us > > feel a little better..Sometimes laughter is the > best medicine so > please don't > > think we don't take our illness seriously because > we do but hey > join in and > > enjoy yourself...You are in our thoughts and > prayers.......Jan > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2002 Report Share Posted January 29, 2002 There are treatments that can put the Hep in remission..It has worked for many in this group..His wife may not ever contact it. Some of us have been married for many years and our spouses do not have it..The chance of contacting it sexually is very slim..If you have faith then put all your wrries in the Lord's hands..Remember everything happens for a reason regardless if we like the outcome or not..It is not us to judge just to accept what is given to us..He doesn't give us anymore than we can bear..I know it seems like we can't but we do..I remember when I found out I just wated to scream and hit something and felt I would never have a relationship again but I found my husband and he accepted me and my illness..I know my words may not console you right now but in time you will be able to see things in a different light..We all have..Just know you can write us anytime to cry...fuss...curse..or laugh..We are here for you and your son.Right now the thing to do is get him to a liver Dr. and let him handle things and remember to ask alot of questions..What they can't answer we usually can..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Hi First off let me welcome you to our group. We all will be glad to share any information and our experience with fighting this virus. You will find that many doctors still don't know very much about hepc. Don't worry there are also many that are very knowledgeable. If your son hasn't already seen a gastroenterologist get him referred as soon as possible. They are the ones that do most of the treating for hepc. I wouldn't worry too much about his wife being infected. Some studies show that it is possible to transmit the virus through intercourse, it seems that the chances of this are almost 0. I've been with my wife for nearly 18 years and she has never been infected. Let me introduce myself. I'm moderator of the group. I contracted hepc in the early 70's. was diagnosed in 1996 and have been through 2 rounds of treatment. Like most of us I was devastated when I found out. With time I learned that this was not an immediate death sentence and life can continue pretty much normal for some time to come. Well it's early and I must get ready for work. Please feel free to ask any questions. All of the people in this group will be more than happy to offer their support and any info that they can. [ ] (unknown) > First I'd like to introduce myself. My name is ...I hope I am > in the right place. Our son was diagnosed just over a week ago. He > is 29 and to be honest we feel like the rug of life was pulled right > out from under our feet. He is recently married just over a year. > The one thing we know so far is we don't know much. The doctor just > informed him gave him a number to call for classes answered a few > questions and I am finding out you either can't believe what you read > at the CDC or NIH or his doctor is way behind the times. Right now we > are lost confused NUMB is a word that comes to mind. His risk factor > was a tatoo. Don't know that it makes any difference I have a > million questions and can't find any answeres that are same > information even twice. To be honest that has left me wondering how > in the world can you fight this if you can't get good solid info. > And this has so far ripped our son apart to the point of saying to > his brother that if his wife tests positive he may need to kill > himself. Its a mess. HELP > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Hi I personally see no reason that your son and his wife should not keep on trying to have a baby. [ ] Re: (unknown) > Thanks Terry. We are doing every thing we can to be supportive of > him and let him know that we stand solidly behind him every step of > the way. Its hard of course as they were up to this point trying > desperately to have a baby. If we can get his pc to recognize the > modem we will do our best to get them on line. Of course they can > always drive here to use ours but its a 20 plus mile drive. Thanks > for all the support we are going to need it. Don't forget ever the > road travels both ways. I know you will win this fight. We all > must. Thanks for the welcome. > > > > > First I'd like to introduce myself. My name is > > > ...I hope I am > > > in the right place. Our son was diagnosed just over > > > a week ago. He > > > is 29 and to be honest we feel like the rug of life > > > was pulled right > > > out from under our feet. He is recently married > > > just over a year. > > > The one thing we know so far is we don't know much. > > > The doctor just > > > informed him gave him a number to call for classes > > > answered a few > > > questions and I am finding out you either can't > > > believe what you read > > > at the CDC or NIH or his doctor is way behind the > > > times. Right now we > > > are lost confused NUMB is a word that comes to mind. > > > His risk factor > > > was a tatoo. Don't know that it makes any > > > difference I have a > > > million questions and can't find any answeres that > > > are same > > > information even twice. To be honest that has left > > > me wondering how > > > in the world can you fight this if you can't get > > > good solid info. > > > And this has so far ripped our son apart to the > > > point of saying to > > > his brother that if his wife tests positive he may > > > need to kill > > > himself. Its a mess. HELP > > > > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 It is my opinion that treatment should be started as early as possible. However hepc is a very slow progressing disease so there is time to gather info and make a rational decision about treatment options. [ ] Re: (unknown) > Right now I guess pretty much I want to know everything. Thats > because we really can't say that we know anything except that he > tested positive and was sent home saying treatment would begin > when it was needed. I realize that I want it fixed and that a cure is > not possible at this time. But thats what I want. Of course right > now the worst is the emotional backlash. They were trying to have a > baby and its a challenge to accept that now no grandchildren will be > possible and how those changes in their lives will effect the > marriage and knowing that is not my territory. But I worry about the > strain that will place on them. I wonder why shouldn't a treatment > be started if its available? I am praying that one day we can all > smile that alone laugh again. Thanks for all your support > > > > feel free to ask anything you want to know..Beleive it or not > those > > Drs. don't know everything as far as side effects of the treatment > go or just > > how we feel in general..I told one Dr. since he didn't have it how > in the > > hell could he be telling me how I felt...We do cut up sometimes to > make us > > feel a little better..Sometimes laughter is the best medicine so > please don't > > think we don't take our illness seriously because we do but hey > join in and > > enjoy yourself...You are in our thoughts and prayers.......Jan > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Welcome . You have come to the right place. None of us here are doctors, but we have found that we get more information from each other than we get from the doctors. Hepatitis C has only been isolated since the early 80's so many dr's are not too up to date on it, especially the long term prognosis. If you search the internet there is much good information out there, but much of it is dated. You have to be careful of that. Chances are slim that his wife has contracted it. Neither my wife nor my ex-wife have been infected with this disease. She should be tested to be on the safe side. As you suspected the method of infection has little impact on anything, it is more for the doctor's studies on the transmission of the disease than anything else. It is not a death sentence. There is treatment available which is somewhat difficult but do-able. I have been through the treatment and am currently in remission. Most of us have had this disease for 15-20 years or more without knowing it. Your son's youth would imply that he hasn't had it too long, which is a plus. They say the earlier you treat it the better the odds of success. It is a slow-moving disease which is in our favor. Ask all the questions you want, there are no dumb questions, we've all had them. Please ask away. Chances are one or more of us have been through what you are wondering about. -dz- __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Jan brings up a good point about the dr. Some of the larger cities have hepatologists, there are none in Green Bay (my home town), but I see a gastroenterologist who is quite knowledgeable about hepatitis. I suspected that I was infected by drug abuse in my youth, my dr told me not to feel like an outcast or anything, he said I would be surprised at how many cases are popping up and it's not " the dregs of society " which I was starting to feel like. I had a little trouble with my Primary physician, push to be referred to a specialist, be it a gastro doc or a hepatologist. -dz- --- Jannewilms42@... wrote: > Oh my heart goes out to you..I am Jan and I > have Hep C but my husband > doesn't..How I got it I am still not sure but it > makes no difference..There > are treatments out there your son could try > according to his Dr. First find a > Hep Dr...and he will help you in the right > direction..He needs to have a > liver biopsy but the most important thing to do IS > NOT GIVE UP...I felt the > same way when I first found out..I felt dirty and > ashamed and that my life > was over when that was the farthest from the > truth..Alot of us in here can > answer your medical questions alot better than I > can...Tell your son not to > feel it is all his fault because however he caught > this he would not have > done it had he known he would have contacted the > Hep..It is just something we > have to deal with..Get him to a Dr, as soon as you > can to help get you more > answers..There are also Herbal methods to try such > as Milk Thistle..You can > get that at a health food store..Try to avoid red > meats..NO ALOHOL...But tell > him to please not give up..Does he have a PC where > he can get in touch with > us himselff?? It may help him more..Yes we do feeel > like screaming in the > beginning and crying but as we learn more then we > see all we have to do is > fight this disease...I found out 2 yrs. ago I have > it and have had it for > almost 20 yrs. Now that was a shock..I won't keep > you any longer cause I > could go on forever but as the day goes by you'll > see ore posts here that > will help you..Please stay with us and you will feel > releif sooner than you > think..Welcome and no question you may have is > ridiculious..We have all had > our share of questions..At times I still do.We feel > blessed you found > us.Where are you from? I am from Louisiana..We are > from all over the > place..It is nice to meet you and please write again > as soon as you can..Pick > your chin up Sweetie everything will be ok.. > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 , hepatitis in and of itself does not present a danger to the potential pregnancy. As regards sex, my dr suggested that after my wife tested negative that we could continue our sex life as normal (no birth control) I should add that my wife is in no danger of getting pregnant. The treatment, however, is very dangerous to pregnancy. If his wife turns out negative, they probably could continue to try to have a baby (check with the doctor)at least until your son begins treatment (if he chooses to). Once treatment is begun, great precautions must be taken to prevent pregnancy. The treatment is very dangerous to a fetus. While on the treatment they suggest using two methods of birth control. If she is positive, and becomes pregnant, she would not be able to begin treatment until after the birth (and nursing) of the baby. --- kbwaltke <kbwaltke@...> wrote: > Thanks Terry. We are doing every thing we can to be > supportive of > him and let him know that we stand solidly behind > him every step of > the way. Its hard of course as they were up to this > point trying > desperately to have a baby. If we can get his pc to > recognize the > modem we will do our best to get them on line. Of > course they can > always drive here to use ours but its a 20 plus mile > drive. Thanks > for all the support we are going to need it. Don't > forget ever the > road travels both ways. I know you will win this > fight. We all > must. Thanks for the welcome. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 " Cure " is an elusive term. Long term data is scarce. The picture I was painted goes like this. If I respond to the treatment (which I did) I am in remission. I will be retested in 6 mos. and if still negative tested again in 1 year. If still negative I will be considered unlikely to ever be bothered by the virus again. There is no reason grandchildren are not possible. While either one of them is on treatment they cannot risk a pregnancy. Most of us have had children while (unknowingly) suffering from this disease. My son is 12 years old and I know I have had this at least for 20 years (my first elevated liver enzymes were recorded, but ignored in 1982) I have not heard of one case of the disease being passed on to the child. There are steps which must be taken to determine if and when your son should start treatment. Mainly a liver biopsy, which will tell them the extent of liver damage, if any. It was almost a year between the time I was diagnosed and I went on treatment. The treatment puts a strain on the body and mind, so there are certain conditions which would prevent the current preferred treatment to be advised. There are new and better treatments always coming, so take heart. -dz- __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 I was engaged to be married when I found out that I had hcv. Naturally I told her right away and it didn't impact our plans any. I found it a little ironic when my dr suggested that my wife (to be) come in to be tested and if she was negative we could continue our sex life as normal. I had to think that if she tested postitive it would be too late to opt for protection anyway. Obviously we needed to know if she had contracted it for various other reasons. Anyway, I would suggest that his wife accompany him when he sees a specialist, so she can learn a little about it too. I think it helped us and her support will be very important to him. -dz- --- Jannewilms42@... wrote: > There are treatments that can put the Hep in > remission..It has worked for > many in this group..His wife may not ever contact > it. Some of us have been > married for many years and our spouses do not have > it..The chance of > contacting it sexually is very slim..If you have > faith then put all your > wrries in the Lord's hands..Remember everything > happens for a reason > regardless if we like the outcome or not..It is not > us to judge just to > accept what is given to us..He doesn't give us > anymore than we can bear..I > know it seems like we can't but we do..I remember > when I found out I just > wated to scream and hit something and felt I would > never have a relationship > again but I found my husband and he accepted me and > my illness..I know my > words may not console you right now but in time you > will be able to see > things in a different light..We all have..Just know > you can write us anytime > to cry...fuss...curse..or laugh..We are here for you > and your son.Right now > the thing to do is get him to a liver Dr. and let > him handle things and > remember to ask alot of questions..What they can't > answer we usually can..... > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 I will save this post and show it to him. Yes the doctor said that his enzymes are almost normal now and that they use the one treatment they really have for when it is needed. He is with an HMO and has only really used it for this. The health insurance was with his wifes work and it is an HMO coverage. Well it all started out with a routine blood work to check for h-pylori. He has never been sick a day in his life ( almost ) I was thinking last night its no wonder he is depressed. Anyone would and should be if they are normal. He was basically told you have an incurable virus and we are not going to treat it till it makes you very ill. That on top of the other issues is not likely to make any newly wedded man ecstatic is it. I will let him know to ask to see a Hep specialist. I hope they have one. May I ask another question a delicate question? He was told the risk to his wife was very significant and the risk to a baby was astronomical. That is not what I am reading ..... in fact I was reading last night in a marriage type relationship it was like 2-4% is that so what is true. That might be the best news I could give him on this. For understandable reasons. > > > feel free to ask anything you want to > > know..Beleive it or not > > those > > > Drs. don't know everything as far as side effects > > of the treatment > > go or just > > > how we feel in general..I told one Dr. since he > > didn't have it how > > in the > > > hell could he be telling me how I felt...We do cut > > up sometimes to > > make us > > > feel a little better..Sometimes laughter is the > > best medicine so > > please don't > > > think we don't take our illness seriously because > > we do but hey > > join in and > > > enjoy yourself...You are in our thoughts and > > prayers.......Jan > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Truth be told I have hardly eaten or slept since our son was given the diagnosis. I felt very much like he was given a go home and wait to get sick then come see us kind of a verdict. As for his wife. That is just incredible. The doctor has them scared to death. His wife is being tested as we speak of course they were told to always use protection and to consider having a baby well that was like 51% for transmission to a baby or something like that .... I am not reading statistics like this in my research on the web. Its no wonder our son is depressed and his wife is scared half out of her mind. Thank you for this info of course this is one area I cannot get involved with but I can make the information available to them with a suggestion that they not take what that doctor said as the gospel and to investigate these issues on their own together at least. They were still just like they were on their honeymoon. Lets just say in the last week the honeymoon is over. > Hi > > First off let me welcome you to our group. We all will be glad to share any > information and our experience with fighting this virus. > > You will find that many doctors still don't know very much about hepc. Don't > worry there are also many that are very knowledgeable. If your son hasn't > already seen a gastroenterologist get him referred as soon as possible. They > are the ones that do most of the treating for hepc. I wouldn't worry too > much about his wife being infected. Some studies show that it is possible to > transmit the virus through intercourse, it seems that the chances of this > are almost 0. I've been with my wife for nearly 18 years and she has never > been infected. > > Let me introduce myself. I'm moderator of the group. I contracted > hepc in the early 70's. was diagnosed in 1996 and have been through 2 rounds > of treatment. Like most of us I was devastated when I found out. With time I > learned that this was not an immediate death sentence and life can continue > pretty much normal for some time to come. Well it's early and I must get > ready for work. Please feel free to ask any questions. All of the people in > this group will be more than happy to offer their support and any info that > they can. > > > > [ ] (unknown) > > > > First I'd like to introduce myself. My name is ...I hope I am > > in the right place. Our son was diagnosed just over a week ago. He > > is 29 and to be honest we feel like the rug of life was pulled right > > out from under our feet. He is recently married just over a year. > > The one thing we know so far is we don't know much. The doctor just > > informed him gave him a number to call for classes answered a few > > questions and I am finding out you either can't believe what you read > > at the CDC or NIH or his doctor is way behind the times. Right now we > > are lost confused NUMB is a word that comes to mind. His risk factor > > was a tatoo. Don't know that it makes any difference I have a > > million questions and can't find any answeres that are same > > information even twice. To be honest that has left me wondering how > > in the world can you fight this if you can't get good solid info. > > And this has so far ripped our son apart to the point of saying to > > his brother that if his wife tests positive he may need to kill > > himself. Its a mess. HELP > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 ; Really? They were told high risk associated to his wife and I think the statistics Greg was given was like 51% or a very high number for a baby. I have got to get this information to my son as this I am sure could play a major role in his ability to desire to fight this and go on. I can see now I need to get them where they will at least be told the truth about this. It could make all the difference in the world to them. Thank you so much for speaking openly with me. I suppose it is not everyday you have a mom join in. I am looking for answers and a game plan... and mostly hope... Gregs Dad and Mom love him with all our hearts and we will be with him every single step of the way. > > > > First I'd like to introduce myself. My name is > > > > ...I hope I am > > > > in the right place. Our son was diagnosed just over > > > > a week ago. He > > > > is 29 and to be honest we feel like the rug of life > > > > was pulled right > > > > out from under our feet. He is recently married > > > > just over a year. > > > > The one thing we know so far is we don't know much. > > > > The doctor just > > > > informed him gave him a number to call for classes > > > > answered a few > > > > questions and I am finding out you either can't > > > > believe what you read > > > > at the CDC or NIH or his doctor is way behind the > > > > times. Right now we > > > > are lost confused NUMB is a word that comes to mind. > > > > His risk factor > > > > was a tatoo. Don't know that it makes any > > > > difference I have a > > > > million questions and can't find any answeres that > > > > are same > > > > information even twice. To be honest that has left > > > > me wondering how > > > > in the world can you fight this if you can't get > > > > good solid info. > > > > And this has so far ripped our son apart to the > > > > point of saying to > > > > his brother that if his wife tests positive he may > > > > need to kill > > > > himself. Its a mess. HELP > > > > > > > > > > > > > > > > > > > > > __________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 I do know these things so well. I am usually the one to encourage others. As to matters of faith... mine is very strong ... I was raised a pastors kid. I have been praying that they would find out it is not as bleak as they were told. I hope you don't mind that I will be sharing this with our son. He needs to know there is hope and better answers out there. Thanks so much > There are treatments that can put the Hep in remission..It has worked for > many in this group..His wife may not ever contact it. Some of us have been > married for many years and our spouses do not have it..The chance of > contacting it sexually is very slim..If you have faith then put all your > wrries in the Lord's hands..Remember everything happens for a reason > regardless if we like the outcome or not..It is not us to judge just to > accept what is given to us..He doesn't give us anymore than we can bear..I > know it seems like we can't but we do..I remember when I found out I just > wated to scream and hit something and felt I would never have a relationship > again but I found my husband and he accepted me and my illness..I know my > words may not console you right now but in time you will be able to see > things in a different light..We all have..Just know you can write us anytime > to cry...fuss...curse..or laugh..We are here for you and your son.Right now > the thing to do is get him to a liver Dr. and let him handle things and > remember to ask alot of questions..What they can't answer we usually can..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Thanks a million. I wish I even knew the questions to ask. We are just past the numb stage heading into kick the wall. I am thinking Greg got his tattoo in 91. Just out of high school. So just around 10 years The doctor told him how sick he gets and how long he lives is up to him no alcohol... modify the caffine drink 8 glasses of water a day and well I hate to say this but he suggested that it was Gregs doing he was in the mess he's in and to start making better choices. Like Greg would have gotten the tattoo had it come with a warning label of Hep C? NOT The more I think on all you have said, all of you so far, the more angry I am at the doctor. This attitude of your positive and come see me when your sick is not appropriate at all. Rest assured I will be making suggestions to our son to get proactive in his care and find out the facts. > Welcome . You have come to the right place. None > of us here are doctors, but we have found that we get > more information from each other than we get from the > doctors. Hepatitis C has only been isolated since the > early 80's so many dr's are not too up to date on it, > especially the long term prognosis. > > If you search the internet there is much good > information out there, but much of it is dated. You > have to be careful of that. Chances are slim that his > wife has contracted it. Neither my wife nor my ex-wife > have been infected with this disease. She should be > tested to be on the safe side. > > As you suspected the method of infection has little > impact on anything, it is more for the doctor's > studies on the transmission of the disease than > anything else. > > It is not a death sentence. There is treatment > available which is somewhat difficult but do-able. I > have been through the treatment and am currently in > remission. Most of us have had this disease for 15-20 > years or more without knowing it. Your son's youth > would imply that he hasn't had it too long, which is a > plus. They say the earlier you treat it the better the > odds of success. It is a slow-moving disease which is > in our favor. > > Ask all the questions you want, there are no dumb > questions, we've all had them. Please ask away. > Chances are one or more of us have been through what > you are wondering about. -dz- > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Our son is part of an HMO plan that has specialists of all kinds on staff. Wonder why they didn't make the referals. My brother has the same HMO plan and they are wonderful with his diabetes and couldn't have been better when he suffered yet another heart attack last fall. I will be suggesting they get answers to what comes next etc. > > Oh my heart goes out to you..I am Jan and I > > have Hep C but my husband > > doesn't..How I got it I am still not sure but it > > makes no difference..There > > are treatments out there your son could try > > according to his Dr. First find a > > Hep Dr...and he will help you in the right > > direction..He needs to have a > > liver biopsy but the most important thing to do IS > > NOT GIVE UP...I felt the > > same way when I first found out..I felt dirty and > > ashamed and that my life > > was over when that was the farthest from the > > truth..Alot of us in here can > > answer your medical questions alot better than I > > can...Tell your son not to > > feel it is all his fault because however he caught > > this he would not have > > done it had he known he would have contacted the > > Hep..It is just something we > > have to deal with..Get him to a Dr, as soon as you > > can to help get you more > > answers..There are also Herbal methods to try such > > as Milk Thistle..You can > > get that at a health food store..Try to avoid red > > meats..NO ALOHOL...But tell > > him to please not give up..Does he have a PC where > > he can get in touch with > > us himselff?? It may help him more..Yes we do feeel > > like screaming in the > > beginning and crying but as we learn more then we > > see all we have to do is > > fight this disease...I found out 2 yrs. ago I have > > it and have had it for > > almost 20 yrs. Now that was a shock..I won't keep > > you any longer cause I > > could go on forever but as the day goes by you'll > > see ore posts here that > > will help you..Please stay with us and you will feel > > releif sooner than you > > think..Welcome and no question you may have is > > ridiculious..We have all had > > our share of questions..At times I still do.We feel > > blessed you found > > us.Where are you from? I am from Louisiana..We are > > from all over the > > place..It is nice to meet you and please write again > > as soon as you can..Pick > > your chin up Sweetie everything will be ok.. > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Yes I can see that they will be needing to have some major discussions with their doctor on this. They were told only protected sex from here on out. Or that is my understanding of what they were told. I can certainly see how that alone contributed to the depression and feelings they are trying to deal with. Its complicated but it really does not help to have his wife and him scared half out of their minds on this. Yes they need to get to a different doctor. I can see this. There is far more hope than we thought to lead a fairly normal life. This is sounding more and more like it is a manageable chronic illness. You have no idea how glad I am that at least I am starting to question and find out what questions we need to ask. Thanks > > Thanks Terry. We are doing every thing we can to be > > supportive of > > him and let him know that we stand solidly behind > > him every step of > > the way. Its hard of course as they were up to this > > point trying > > desperately to have a baby. If we can get his pc to > > recognize the > > modem we will do our best to get them on line. Of > > course they can > > always drive here to use ours but its a 20 plus mile > > drive. Thanks > > for all the support we are going to need it. Don't > > forget ever the > > road travels both ways. I know you will win this > > fight. We all > > must. Thanks for the welcome. > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 This is the first time I think I have smiled since Greg called 2 weeks ago now Friday. Can someone explain the difference between an ultrasound of the liver and a biopsy? They did ultrasound and said it was normal. But that is not a biopsy is it? I also read something about viral count and I know they didn't do that on him. Just the sgpt sgot. and the Hep C test. That and told him to call and attend this class to learn more about this. Thats it. I feel at least like now I can tell Greg that there is hope and there is treatment and you need to ask if tests have not been done why not You have to know at least what questions to ask. He was told he could live a long life if he never drinks .. that was about it. > " Cure " is an elusive term. Long term data is scarce. > The picture I was painted goes like this. If I respond > to the treatment (which I did) I am in remission. I > will be retested in 6 mos. and if still negative > tested again in 1 year. If still negative I will be > considered unlikely to ever be bothered by the virus > again. > > There is no reason grandchildren are not possible. > While either one of them is on treatment they cannot > risk a pregnancy. Most of us have had children while > (unknowingly) suffering from this disease. My son is > 12 years old and I know I have had this at least for > 20 years (my first elevated liver enzymes were > recorded, but ignored in 1982) I have not heard of one > case of the disease being passed on to the child. > > There are steps which must be taken to determine if > and when your son should start treatment. Mainly a > liver biopsy, which will tell them the extent of liver > damage, if any. It was almost a year between the time > I was diagnosed and I went on treatment. The treatment > puts a strain on the body and mind, so there are > certain conditions which would prevent the current > preferred treatment to be advised. > > There are new and better treatments always coming, so > take heart. -dz- > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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